The COVID-19 pandemic has impacted the daily life of nearly everyone. The rare disease community has been hit particularly hard as those with rare diseases are more susceptible to getting COVID-19. Not only do many diseases compromise the immune system but the financial burden of affording care forces many patients and caregivers to continue to work outside the home. The lack of social interaction has also impacted patients’ mental health and patient advocacy groups’ possibilities to fundraise and educate.

One hurdle for rare disease patients right now is accessibility. Rare disease patients often need frequent clinical visits and/or specialized treatment. As many clinics and hospitals restrict access, that can mean that more rare disease patients are being treated at home. Home visits may last several hours and, combined with possible inconsistent PPE requirements for these professionals, rare disease patients are put at even higher risk. As such, there is a need for healthcare professionals to establish a standard set of practices for home visits. Equally important, patients should be provided with tools necessary to share their concerns if working with a healthcare professional who is making them feel unsafe.

Limited access to health care professionals, whether it is real or perceived, can also mean that some patients with chronic, multisystemic conditions will not get the care they normally need to monitor disease progression and/or a person’s quality of life. Often missing one or two doctor’s appointments is not that big an issue but as COVID-19 will likely be a concern from the rest of the year, there needs to be a better means to educate patients about the pros and cons of letting their disease possibly progress for fear of getting infected with the coronavirus.

While much of this patient education and empowerment is the responsibility of patient advocacy groups, they too, are impacted by the pandemic. Due to community restrictions most conferences, galas, patient meetings, and fundraising events have been postponed or cancelled. The effect of these events being moved or cancelled is two-fold: (1) these events are often the only way for these rare, isolated, individuals to get together and share ideas, (2) these events provide an opportunity to let the outside community know about their particular rare condition.  With the cancellation of these live events, advocacy groups must find novel ways to raise awareness, bring the community together, and raise funds. All tasks that are difficult to accomplish during these uncertain times.

Fortunately, many patient advocacy groups are finding ways to achieve their goals and inspire their community. For example, some groups have held virtual fundraising events– such as the Virtual Walk for Cystic Fibrosis being held on May 31st (for more information go here) or Max’s Big Ride at Home starting June 1st (for more information go here).

In summary, the rare disease community has been hit hard by the current pandemic. Between health and financial concerns, accessibility of care, and lack of social interaction, rare disease patients have had to adapt to less-than-optimal conditions. Luckily, this community is resilient by nature and has found alternative means of supporting each other through virtual fundraisers as well as continuous advocacy through social media. As the pandemic continues, we look forward to seeing new ways in which this innovative community rises to the occasion to keep their loved ones as safe and healthy as possible.